How I got here, Part 2: Choose your charities carefully!

I love to cycle.  My love for bikes started when I was an undergraduate … one of my physics lab teaching assistants (TA)  had a beautiful, very expensive bike that he had won in a bike race.  That bike went everywhere with him, and was a permanent fixture during labs.  As I was hanging weights off of pulleys, and trying to figure out why the hell my circuits weren’t working, I’d sneak glances at that beautiful, sleek bike and wish it were mine.  My lab TA — the owner of said bike —  did semi-professional racing on weekends, and his body was a toned, lean-mean machine.  He made biking look very, very cool.

My first “expensive” bike was a Cannondale — an aluminum frame.  I thought I had finally “arrived”!  I gradually built up the endurance to do real bike rides (50+ miles).   I met new biking enthusiasts when I moved to the east coast, following graduate school, where I was a postdoctoral research associate.  They introduced me to riding in these lovely charity rides, called “MS150” rides.  I had never ridden in a supported group ride before then, and what a hoot these rides were!  Hundreds of participants, themed rest stops every 10-15 miles or so, and a party-like atmosphere, covering 150 miles in 2 days, and raising a minimum contribution of $150 per participant to the Multiple Sclerosis Society!  The rides often have interesting destinations.  I’ve done several rides since then, but the first ride was a gorgeous journey through the Shenandoah Valley that ended at a winery, and included over-night camping.  Life just doesn’t get any better, and it was all for a good cause, I figured.  I was in the ride for the fun of it and the wonderful comradery of being surrounded by so many fellow bike-lovers. I didn’t really have a clue what this “multiple sclerosis” was, that I was raising money for.   “MS” brought to mind kids in wheelchairs and endless Jerry Lewis telecons.

Two years after that first MS150 ride,  I had just completed Year 1 of my first real “Big Girl” job:  a university professor.   To help work out some of the stress that comes with being a young, untenured faculty member, I was working out every morning by taking a long run around the local park.  One day, during my run after we had gotten some rain, I had a pretty nasty fall.  My foot had hit some green scum and down I went on one knee.  It hurt badly and it left me hobbling for a while.  But what happened the following morning was an event that would have lasting repercussions for a very long time:  I woke up with poor vision in my right eye.  I went on to work that day, taught class, but the vision just kept getting worse.  I finally made the decision to go see an optometrist, convinced that I had a retinal tear or something just as bad.  Unfortunately for me, my decision to seek professional help had very poor timing:  it was on an evening preceding a July 4 holiday.

I finally found an optimist optometrist(!) office that was still open.  She took one look at me, told me she couldn’t help me, and instructed me to see an ophthalmologist immediately.  Fortunately, I was able to get an appointment before the holiday began, and the doc said that I had “optic neuritis”.  I was put on IV steroids (I have vivid memories of protecting my arm — which had a port in it — from getting bumped by the crowds gathered to watch the fireworks) and sent to a neurologist, who ordered an MRI.  The conclusion by the neurologist was that my optic neuritis — often the first clinical manifestation of multiple sclerosis — was an isolated incident, as my MRI only showed 1 spot that was non-specific to MS.   After a period of a couple of months, my vision returned, and I didn’t think much more of it.

Fast-forward to 15 years (omitting a couple of stories that maybe I’ll tell in a future post, that have the theme “You know that you have a crappy doctor when …”):  I’ve been noticing my vision has not been as “crisp” as it used to be, and finally decided to go for a long-overdue eye exam.  I knew that bifocals would be unavoidable in the new prescription, this time. Naturally, I attributed age as the reason for my vision seeming  poor.

The optometrist assistant asked me if I’d be interested in having an “OCT scan”.  She claimed that the scan would help identify problems like retinal tears, before they even become a problem.  The scan that I would do at that time would be a baseline against which future scans could be compared. For $50, seemed like a good idea.  Baselines are good, right?!

The optometrist looked a bit puzzled as he reviewed the OCT scan … finally he admitted that there was probably a calibration problem with their machine, and that I should come back in a week and repeat the test.  The results he was looking at showed significant atrophy in the Retinal Nerve Fiber Layer (RNFL), which if true, would indicate I had glaucoma.  Yet, my eye pressures were on the low end of normal … certainly not near values that glaucoma would be suspected.  There must be something wrong with the scans.

The repeat was done the following week … and … the results were consistent with the previous scan. There was no denying it:  my RNFL in both eyes (not just the right one, that had optic neuritis) was seriously degraded:  averaged RNFL thicknesses were 58 microns and 70 microns in the right and left eyes, resp. (Compared to ~100 microns for a healthy eye).  The RNFL is serious business — they are what enables one to detect light, and when they are gone, they are gone.  Glaucoma — high eye pressure — causes them to atrophy by compressing them against the back of the eye.   The doc took an action to ask some colleagues for advice … and in the meantime, diagnosed me “glaucoma suspect”, but was reluctant to start the glaucoma eye drops (which serve to reduce eye pressure — but remember my eyes already had low pressure) until he better understood the situation.

I get call from the optometrist asking me to see him asap … he informs me that some colleagues suggested to him that a neurological cause could produce the thin RNFL, and that I should see a neurologist.  I did, an MRI was ordered, and on Oct 30, I was diagnosed with Multiple Sclerosis.  Yes, the same condition for which I biked several hundred miles, during a more innocent era of my life when all seemed well with my health.  The irony is not lost on me.

2 thoughts on “How I got here, Part 2: Choose your charities carefully!

  1. Pingback: A Matter Of Uncertainty | stargzrblog

  2. Pingback: The Bike Ride That Took My Breath Away | stargzrblog

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